Ductal prostate cancer

GOOD EVENING... My Dr. refused radiation treatments until the chemo shrank the cancer. He used to refer to my prostrate as a blob. I did not understand what he meant until I saw a picture of a prostrate with ductal on the net. There was no definition. It was almost a solid mass. I also have prostrate cancer. He would not treat me with radiation until he thought I had a reasonable chance of being cured. Giving me casodex and luprin did not work. I wanted the best chance that was possible. Soon as the prostrate started shrinking from being treated with taxotere  and carboloplattin the doctors called. Even the heart doctor called. I had nine chemo treatments. Took six weeks off to heal and started radiation. You will be instructed to drink at least two bottles of water before you're scheduled appt. This will keep the bladder out of the way of the radiation. You're stools will change permanently into small hot dogs. I was told by the nutritionist to eat two containers of yogurt daily. That helped me . I also take iron supplements daily and probably eat better than I had in the past. My radiologist said the most important part of the treatment was the driver. He was right as I had very little incontinence. With all the research I have done it seems that our best chance of survival is for the doctors to use every trick in the book to destroy the cancer. Ed is part of the deal. However there are treatments for that also. I follow Dr snuffy myers web site. He believes radiation is one of the best treatments also. Sign up and you will receive weekly videos.  You may get tired from the treatments. Just take a nap and the tiredness will seem to get less after a while. Good luck and if you have any questions just ask. Funny thing I even went on YOU TUBE to do research. You tube had many videos dealing with all my questions.Have a great evening....BILL

GOOD EVENING.....That is great news. I had wondered how DANNY was doing. You were one of the first that I consulted when trying to decide how to deal with the ductal and prostrate cancer. Yes because of my conversation with you my medical onocologist did contact MD ANDERSON prior to treating me. My cancer did spread to the bone. Very small area, only 2mm. They chose to treat the bone with radiation since it could be done at the same time that I received treatment for the prostrate /ductal cancer. So far all is good, psa is undetectable. Thanks for being there when I needed guidance. I am very happy that DANNY is doing well. Thanks.....BILL

Buguy, I also have 10% Ductal with 90% Acinar. I was Gl 4+3 with teriary 5's.

When I queried the issue of Ductal with my Uro, he said it just reinforced the aggressive nature of the cancer and it needs to be treated aggressively.

So I had an RP, adj RT and am on 12 months ADT.

So far so good

Chas

Hi Sweetjoy,
one thing i've realised in this is the high degree of variance in the prostate biopsy results. We sent my husband's biopsy tissue to THREE pathologists (the first came back with "ductal features", we insisted on a 2nd review by the best person in our country, she was on leave so passed it to another guy, so we insisted on a 3rd review when she got back from her leave) The 2nd and 3rd reviews found no ductal features, but in our case, because one of the cores was Gleason 4+5, she felt it evinced aggressive cancer anyway, so the addition of "ductal" didn't affect the treatment plan. You might want to consider this additional review as an option.

For the record, we started on HT the day of PCa Diagnosis and now we have found an oncologist we are comfortable with and are considering starting chemo (taxotere) in August which would be 3 mths post dx. We've also made appointments for genetic testing (for BRCA1/2 mutation) and also Foundation One to test for somatic mutations in the tissue. Anything to give us a few more options....

Hope that helps - we are also 3 weeks into diagnosis so my information is limited and i completely know how you are feeling!

HI Nccajun I have been doing well these last year and a half. The psa is <.05 and I hope it stays there. Be Life is good, I visit the UNIV. OF PENN. two to three times a year for cat scans, bone scans and blood test. I was lucky with the DRS that I picked. I chose DR JUSTIN BECKLEMEN as my radiologist and DR STEPHEN KEEFE as my oncologist. But I also appreciated the fact that the hospital had a full cancer board that met weekly. I also had a top urologist that checked out the bladder and kidneys. The cancer was beginning to come come through the bladder wall but the 9 rounds of chemo followed by radiation and Lupron. With many eyes viewing my cancer I had more hope. University of Penn did everything they could for me. My last visit with the nurse practitioner told me to go home and live. That is what I have been doing. I have ED and am working on that but life is good and thank you for asking. BILL C

Hi nccajun, Bill and SweetJoy,

Seems this is the thread with the most recent update on Ductal Prostate cancer. I am from China and My father was diagnosed with Ductal Prostate Cancer December 2016. I was looking all over the internet for information and to see if I can find any fellow patients and this seems to be the only place.

As people have mentioned, there is no standard treatment procedure for Ductal Prostate Cancer. My father's urologist put him onto immediate chemo + HT, (Taxotere +Triptorelin), and indicated that only when this combination manage to shrink the tumor would he be able to proceed with Prostatectomy. He has just went through first Chemo, the second coming in a few days.

Would definitely like you all to share your story on how you handle your treatments to give my dad encouragement! He was worried that he will increasingly feel weaker after each Chemo treatment and by the time even if doctor consider tumor shrink enough for surgery my dad would be too weak to handle the surgery. Hope you can share your pre-op Chemo/HT experiences and how to best keep one strong through these. Thank you!

Hi Firmana,

Welcome to our little family, but sorry about your father's diagnoses. As you are realizing, finding ductal prostate cancer info is very frustrating. Danny's cancer had already spread to bladder, ureters, lymph nodes, and had tumors close to the rectum wall. So when we got the diagnoses, we were pretty grim. Plus, his age at the time was a strike against surgery. However, all patients and cases are different. Danny was a very healthy active 70 yr old at the time of his diagnose, and the doctors at MD Anderson in Houston Texas gave us some hope. His Gleason 4+5=9 and highest PSA was 8.4. He received 5 rounds of chemo drugs Cabazitaxel and Carboplation, along with hormone therapy(Lupron). Surgery on 6-26-13 to remove bladder, prostate, seminal vesicles, testicles, and lymph nodes. Had creation of ileal urinary cutaneous conduit. Final pathology report T4,N1,M0. Since then, he has continued to be cancer free; however, he's been in and out of the hospital several times due to serious infections and problems with kidneys...mainly due to having his bladder removed. Also, he continues to have fatigue and stamina problems.

Like Dr. Who said, finding the right doctor is the key. We left a major hospital closer to our home to fly to Texas because the doctor there was one of the few that have actually treated ductal prostate cancer. Again, no two cases and patients are the same. If you have any more questions, please feel free to ask and we will be more try to answer the best we can. Good luck

Hi Firemana,

The first hospital we went to wanted to do chemo then surgery, and possibly radiation. They were treating it like regular prostate cancer. The surgeon that did biospy thought it was bladder cancer. He actually told me that he'd never seen anything like what Danny's cancer looked like. When we met with the various oncologist, we asked each doctor what would he do if he was in this situation. The radiation oncologist said if it were him, he wouldn't do anything, just control pain and enjoy what life he had left. Was not an option for us!!!!

We were disheartened when we first arrived at M D Anderson but after our first meering, we began to be optimistic. Our local oncologist said he'd never thought of the combo that Danny was taking. After 5 chemo sessions, the CT showed the cancer was gone/ shrunk and we could proceed with surgery.

As I said before, he is still cancer free doing on 4 years. And from what I've been able to find, there is not much info on ductual past 5 years. However, he has ureter blockage problems as a result of the urostomy. In fact, we have to head back to Houston unexpectedly because there is more blockage and kidney isn't functioning as it should.

Danny's cancer was extensive, but so far so good. Always have hope!!!!!

Hi,
I'm not sure if everyone is talking about the same thing since Ductal and Intraductal(IDC-P) are two different types of cancer. I have IDC-P which was found at biopsy in addition to PCa (4+3). They don't give either ductal or IDC-P a gleason score but there are studies that show IDC-P stages that correlate to either grade 4 or 5 (nothing lower) so you are high risk.
My treatment plan was Lupron 6 mth injections (18 mths total) started on the same day of chemo infusion #1 (6 total infusions of Taxotere), that was followed by 25 EBRT rounds daily followed by 1 HD Brachy boost. My psa has never been lower that .17 (started 6.1) and has never stabilized (up and down all the time).
I was told this treatment plan was the best modern medicine had to offer.
I just had surgery last week to remove my adrenal gland and a mass on it that presented itself on CT as cancerous and it has been growing over the last 6 months. Waiting on pathology for a final dx.

I found it very difficult to find information as well so picked a team I felt was cutting edge and willing to try things that were not normal standard of care since there isn't one for us. My lead onc was also recommended by some top docs and Emory so I didn't just pick from the phone book.

I thought my recent article would be of especial interest to you guys diagnosed with ductal and intraductal:

/www.healingwell.com/community/default.aspx?f=35&m=3974099